Get involved

Rare Disease Day is our chance to raise awareness and funds for the dedicated support groups who usually go unnoticed in our communities.

Organise or take part in a Rare Disease Day event and you’ll be contributing to support groups that help improve the lives of people with rare diseases throughout New Zealand.

The objectives for Rare Disease Day are to:

Raise awareness among the general public and decision makers about rare diseases and their impact on patients’ and families’ lives,

Raise funds for your favourite rare disease support group,

Have some fun while you do it!

Organising your Rare Disease Day event

Here are eight easy steps to create a successful event:

Decide what you want to do

Identify the group you are going to support. Ideally it will be one that you or a friend or colleague have some involvement with, or you can select one from the support groups directory on the NZORD website.

Talk to the principal at your local school, your manager or friends and family and decide what kind of fundraiser you would like to hold. Think about what types of events your community are likely to support.Here are some fundraising ideas to get you started:

Coin trail

Bake sale

Sausage sizzle

School mufti day

Raffle

Disco

Gala evening

Movie evening

Pub quiz

Seek sponsors and take part in a fun run/walk/swim

Promote your event

Download and print this year’s poster from the support materials page. Make sure you pin them up in prominent places – like school and work noticeboards. You could also share information about your event via local newsletters, community emails or radio stations. And don’t forget to share your event with us.

Recruit people to take part in the event. Ask them to commit via Facebook, via email or by signing up at a central point. If you’re using Facebook to raise awareness, make sure you join the New Zealand Rare Disease Day group so that we can keep you in the loop on what’s happening throughout the country to support Rare Disease Day. You can also follow us on Twitter.

Collect donations

Make sure a system is in place for capturing the donations and recruiting a second person to count, check and verify the total.

Notify the support group of the amount your event has raised and tell them how it has been sent to them – e.g. bank deposit, online payment, cheque etc., or send the funds to NZORD, tagged for your chosen group. Depositing the funds through the school office or the workplace accountant is another good way of ensuring confidence in the fundraiser.

Report the total back to all who took part – you might like to do this via the same methods that you advertised your event.

Send a message of thanks to all those who took part in the event, and include a receipt for tax purposes for all donations of $5 or more where this has been requested by the donor.

Making a donation

NZORD is the voice of the 377,000 Kiwis with a rare disorder.

Your donation enables NZORD to support, assist and promote better health care and wellbeing for patients and their families living with a rare disorder in New Zealand.